Invited presentation to the University of Kentucky's Markey Cancer Center. I used the opportunity to update cancer prevention and control specialists on implications of the President's Cancer Panel report on Connected Health.

1. Bradford W. Hesse, PhD
Chief, Health Communication and
Informatics Research Branch
Improving Cancer-Related Outcomes
with Connected Health
Implications from the 2016 President's
Cancer Panel Report

2. Jessie Gruman, Pres. CFAH
In Memoriam
December 7, 1953
- July 14, 2014

3. “The millions of dollars of
biomedical research … aimed at a
disease that was costing 10’s of
thousands of dollars to treat and
it ultimately relied on the actions
of a skinny, weak, scared 20-year
old to have its impact.”
Jessie Gruman

4. “Those of us with multiple chronic
conditions may consult many
physicians in the course of a year.
Last year, I saw 11. Not one of my
doctors has ever communicated
directly with another… I am the sole
arbiter of who gets what information
in what format and when.”
Jessie Gruman

5. No Ma&er Where:
The Movie Dr. Kevin B. Johnson
Filmmaker

12. Disconnections in Cancer
Care

13. *Source: Jemal,A., Siegel, R., Xu, J., & Ward, E. Cancer statistics, 2010. CA Cancer J Clin, 60(5), 277-300.
John Seffrin, CEO American Cancer Society
“We know what kinds of things need to be
done to increase the number of people who
survive from 350 per day to1,000.”
Lives saved (annually): 1975 to 2005

14. The Epidemic of Communication Errors
Blocking Optimal Outcomes
❑ Total number of preventable
medical errors from all
sources exceeds 17 million
each year
❑ Joint Commission’s Sentinel
Database reports 70% of all
reported events had
communication as root cause
http://www.jointcommission.org/assets/1/18/Root_Causes_by_Event_Type_2004-2014.pdf

15. Source: Zapka JG, Puleo E,Taplin SH, Goins KV,Yood MU, Mouchawar J, et al. Processes of care in cervical and breast cancer screening
and follow-up--the importance of communication. Prev Med. 2004;39:81–90. [PubMed]
Communication Breakdowns in Care

16. Reforging the Links: Assessment
Alex Krist
Virginia Commonwealth
Grant # CA168795

17. Michael Fiore,
U Wisconsin
CA197573
Reforging the Links: Prevention

18. “Within 90 days of identifying a care gap
… 6X pap screens completed,
… 6X mammograms completed,
… 10 X CRC screening completed”
-Testimony to President’s Cancer Panel, 2014
Nirav Shah
VP & COO,
Kaiser So Cal
Dashboards
Focused
Comms
EHR Tracking
Reforging the Links: Screening

19. RobinVanderpool DrPH, CHES
University of Kentucky
Reforging the Links: Adaptation

20. Reforging the Links: Dx & Treatment
Transforming the Patient Encounter:
Source Kaiser Internal Data
• Synchronous &
Asynchronous
Comms
• Point of Need Care
• Connected Support

21. Reforging the Links: Survivorship
Survivorship Care Planning,
Tracking, & Vigilance
“Long Data” over Life Span
Ellen Beckjord,
UPMC
Ben Shneiderman,
UMD

22. Reforging the Links: Advanced Cancer
Lori DuBenske,
U Wis.
Channels of
Communication
David Gustafson,
U Wis.
“High Touch” for patients, families
supported through High Tech”

23. Rise of the “Connected
Patient”

24. “Almost half of the
Internet users in 1997
reported looking for
health information”
-- Rice & Katz
Source: Rice RE, Katz JE. The Internet and health communication : experiences
and expectations. Thousand Oaks, Calif.: Sage Publications; 2001.

25. Search Term % Using Term
Depression 19%
Allergies/sinus 16%
Cancer 15%
Bipolar disorder 14%
Arthritis/rheumatism 10%
High blood pressure 10%
Migraine 9%
Anxiety disorder 9%
Heart disease
Sleep disorders
8%
8%
Terms Searched
Source: Rice RE, Katz JE. The Internet and health communication : experiences
and expectations. Thousand Oaks, Calif.: Sage Publications; 2001.

26. Search Term % Using Term
Depression 19%
Allergies/sinus 16%
Cancer 15%
Bipolar disorder 14%
Arthritis/rheumatism 10%
High blood pressure 10%
Migraine 9%
Anxiety disorder 9%
Heart disease
Sleep disorders
8%
8%
Terms Searched
Source: Rice RE, Katz JE. The Internet and health communication : experiences
and expectations. Thousand Oaks, Calif.: Sage Publications; 2001.

27. An Extraordinary
Opportunity

28. Health InformaSon NaSonal Trends Survey (HINTS)
hints.cancer.gov Funded 2001

29. Where would you prefer to go for cancer
informaSon?
Source: Hesse BW, Nelson DE, Kreps GL, et al.Trust and sources of health information: the impact of the Internet and its implications for health care
providers: findings from the first Health Information NationalTrends Survey.Arch Intern Med. Dec 12-26 2005;165(22):2618-2624.

30. Where did you go for cancer informaSon?
Source: Hesse BW, Nelson DE, Kreps GL, et al.Trust and sources of health information: the impact of the Internet and its implications for health care
providers: findings from the first Health Information NationalTrends Survey.Arch Intern Med. Dec 12-26 2005;165(22):2618-2624.

31. See: Rutten LF, Moser RP, Beckjord EB, Hesse, BW, Croyle RT. Cancer Communication: Health Information
National Trends Survey. Washington DC: National Cancer Institute. 2007.
*51.6% looked for self
*45.7% looked for others
2003*
Lila Rutten
Mayo Clinic
Rick Moser
NCI
Ellen Beckjord
U of Pittsburgh Med
Diffusion of online health informaSon seeking

32. See: Rutten LF, Moser RP, Beckjord EB, Hesse, BW, Croyle RT. Cancer Communication: Health Information
National Trends Survey. Washington DC: National Cancer Institute. 2007.
*51.6% looked for self
*45.7% looked for others
2003*
2005*
*58.4% looked for self
*59.4% looked for others
Lila Rutten
Mayo Clinic
Rick Moser
NCI
Ellen Beckjord
U of Pittsburgh Med
Diffusion of online health informaSon seeking

33. Source: Hesse BW, Moser RP, Rutten LJ. Surveys of physicians and electronic health information. N Engl J Med. Mar 4
2010;362(9):859-860.
HINTS Trends: New England Journal 2010

34. Source: Hesse BW, Moser RP, Rutten LJ. Surveys of physicians and electronic health information. N Engl J Med. Mar 4
2010;362(9):859-860.
HINTS Trends: New England Journal 2010

35. Source: Hesse BW, Moser RP, Rutten LJ. Surveys of physicians and electronic health information. N Engl J Med. Mar 4
2010;362(9):859-860.
HINTS Trends: New England Journal 2010

36. HINTS Selected to Track HP 2020 Goals:
Health IT

37. Tracking & AdjusSng HP 2020 Goals:
Access to the Internet
Source: Hesse BW, Gaysynsky A, Vieux S, et al. Meeting the Healthy People 2020 Goals: Using the Health Information
National Trends Survey to Monitor Progress on Health Communication Objectives. Journal of Health Communication.
2014;19(ISS12).

38. Tracking & AdjusSng HP 2020 Goals:
InteracSng with Health Systems
Source: Hesse BW, Greenberg AJ, Rutten LJ. The Role of Internet Resources in Clinical Oncology:
Promises and Challenges. Nature Reviews; Clinical Oncology (in press).

39. Tracking & AdjusSng HP 2020 Goals:
Broadband & Mobile
Source: Hesse BW, Greenberg AJ, Rutten LJ. The Role of Internet Resources in Clinical Oncology:
Promises and Challenges. Nature Reviews; Clinical Oncology (in press).

40. Mobile ApplicaSons Extend Care to “Point
of Need”
NIH Funding Opportunities:
• NOT-OD-13-041: National Science
Foundation - National Institutes of Health
NSF-NIH Interagency Initiative: Smart and
Connected Health
• PAR-16-292: Mobile Health: Technology and
Outcomes in Low and Middle Income
Countries (R21)

41. Journal of NaSonal Cancer InsStute: Special
Issue on Changing Comms Landscape
NIH Funding Opportunities:
• Innovative Approaches to Studying Cancer
Communication in the New Media
Environment
» PAR-16-249 (R01)
» PAR-16-248 (R21)

42. Consumer Engagement: Internet of Things
(IOT) at Local Home Depot

43. The IOT RevoluSon Applied to Health:
PaSent Engagement & Telemedicine

44. Behavioral Support from IOT Technologies:
e.g., Adherence
June 2015, Office Behavioral and Social Science Research NIH-OD

46. “When I wrote ‘The World is Flat’ …
Facebook didn’t exist; Twitter was a
sound; the cloud was in the sky; 4G was a
parking place; LinkedIn was a prison;
applications are what you sent to college;
and Skype, for most people, was a typo.”
- Thomas Friedman, “Thank You for Being Late” (2016)
A “Superconvergence” of Mobile, IOT,
Cloud, and Data Flows

47. The President’s Cancer
Panel

48. President’s Cancer Panel
Barbara K. Rimer, DrPH
Univ. of North Carolina at Chapel Hill
Hill Harper, JD
Cancer Survivor, Actor, and Best-Selling
Author
Owen N. Witte, MD
University of California Los Angeles

49. Connected Health
Source: https://prescancerpanel.cancer.gov/

50. Connected Health

51. Enable Interoperability
Action Item 1.1: Interoperable health IT system.
Action Item 1.2: Technical standards for cancer.
Action Item 1.3: Standard, open API platforms.
Source: Office of the National Coordinator for Health Information Technology (2015). Connecting Health and Care for the Nation: A 10-
year Vision to Achieve an Interoperable Health IT Infrastructure. Washington, DC, Department of Health and Human Services,: 13.

52. Action Item 1.1: Interoperable health IT system.
Action Item 1.2: Technical standards for cancer.
Action Item 1.3: Standard, open API platforms.
Shore up Standards

53. Action Item 1.1: Interoperable health IT system.
Action Item 1.2: Technical standards for cancer.
Action Item 1.3: Standard, open API platforms.
Application Programing
Interfaces (API)

54. Action Item 1.1: Interoperable health IT system.
Action Item 1.2: Technical standards for cancer.
Action Item 1.3: Standard, open API platforms.
Application Programing
Interfaces (API)

55. Quantified Self
Patient Engagement
Action Item 2.1: Develop tools for patient engagement.
Action Item 2.2: Patients should flag errors in record.
Action Item 2.3: Better tools for Clinical Trials.

56. Medication Management
Patient Engagement
Action Item 2.1: Develop tools for patient engagement.
Action Item 2.2: Patients should flag errors in record.
Action Item 2.3: Better tools for Clinical Trials.

57. Patient Portals
Patient Engagement
Action Item 2.1: Develop tools for patient engagement.
Action Item 2.2: Patients should flag errors in record.
Action Item 2.3: Better tools for Clinical Trials.

58. The Smart Home
Patient Engagement
Action Item 2.1: Develop tools for patient engagement.
Action Item 2.2: Patients should flag errors in record.
Action Item 2.3: Better tools for Clinical Trials.

59. Action Item 2.1: Develop tools for patient engagement.
Action Item 2.2: Patients should flag errors in record.
Action Item 2.3: Better tools for Clinical Trials.
Patients as QC Support

60. Action Item 2.1: Develop tools for patient engagement.
Action Item 2.2: Patients should flag errors in record.
Action Item 2.3: Better tools for Clinical Trials.
Patients as QC Support

61. Action Item 2.1: Develop tools for patient engagement.
Action Item 2.2: Patients should flag errors in record.
Action Item 2.3: Better tools for Clinical Trials.
Source: Source: https://www.cancer.gov/syndication/api
Tools for Clinical Trials

62. Support Clinical Workforce
Action Item 3.1: Support for high quality care.
Action Item 3.2: Employ human centered design.
Action Item 3.3: Interfaces for oncology workforce.

63. Action Item 3.1: Support for high quality care.
Action Item 3.2: Employ human centered design.
Action Item 3.3: Interfaces for oncology workforce.
Human-Centered Design

64. Action Item 3.1: Support for high quality care.
Action Item 3.2: Employ human centered design.
Action Item 3.3: Interfaces for oncology workforce.
Human-Centered Design
Interdisciplinary Research
• Human Computer Interaction
• Organizational Systems
• Communication
• Design
• Cognitive Psychology

65. Action Item 3.1: Support for high quality care.
Action Item 3.2: Employ human centered design.
Action Item 3.3: Interfaces for oncology needs.
Support Needs in Oncology
Paul Jacobsen, AD

66. Action Item 3.1: Support for high quality care.
Action Item 3.2: Employ human centered design.
Action Item 3.3: Interfaces for oncology needs.
Support Needs in Oncology
November 2016
Veronica Chollette Sallie Weaver
Supports for Team Based Care

67. Public Access
Action Item 4.1: Bolster public access.
Action Item 4.2: Ensure provider access.
“Connect2HealthFCC is exploring the intersection of
broadband, advanced technology and health and further
charting the broadband future of health care – serving as
an umbrella for all FCC health-oriented activities to help
enable a healthier America.”

68. Provider Access
Action Item 4.1: Bolster public access.
Action Item 4.2: Ensure provider access.
Rural Health Pilot Program

69. Learning Oncology System
Action Item 5.1: Learning Oncology Care Systems.
Action Item 5.2: Enhance surveillance.
Action Item 5.3: Data integration.

70. Enhance Surveillance
Action Item 5.1: Learning Oncology Care Systems.
Action Item 5.2: Enhance surveillance.
Action Item 5.3: Data integration.
Patient Generated Health Data: SEER
Rapid Response Special Study

71. Data Integration
Action Item 5.1: Learning Oncology Care Systems.
Action Item 5.2: Enhance surveillance.
Action Item 5.3: Data integration.
15 Cancer Centers Funded: National
Meetings Open to All

72. High Priority Research

74. Thank You!
On behalf of those who
will benefit,
www.cancer.gov